How the MSSU is evaluating patient engagement in health research
For more than a decade, the Maritime SPOR SUPPORT Unit (MSSU) has helped bring together people with lived and living experience (PWLLE), researchers, health-care providers, decisionmakers and other partners to improve health care across the Maritimes.
But how do we know we’re creating meaningful partnerships?
MSSU has always tracked important measures, such as how many research projects included people with lived and living experience and how many participated in governance. Those numbers show engagement is happening, but they can’t tell us whether the experience was meaningful for everyone involved in the research team.
“We recognize that counting people isn’t enough,” said Lisa MacDougall, MSSU’s Patient Engagement Coordinator. “It is like teaching to the test – it can create tokenistic engagement. Organizations also need to understand what the engagement experience was actually like for all members of the research team. As a collaborative activity, it has to benefit all partners.”
Drawing on the Centre of Excellence on Partnerships with Patients and the Public’s (CEPPP) Learning Together: Evaluation Framework for Patient and Public Engagement in Research, the MSSU created a practical survey to help research teams reflect on the engagement experience and identify opportunities to strengthen future partnerships.
The survey was co-developed by an interprovincial working group and shaped through discussions at the 2024 MSSU Annual Meeting. The group focused on three key areas of the CEPPP Evaluation Framework: welcoming people with lived and living experience, supporting clear communication throughout the project, and clarifying roles on the research team.
The survey begins with two background questions about each participant’s role on the research team, followed by nine statements that ask participants to rate their experience. It concludes with space to share reflections and suggestions to help research teams learn from the engagement experience and strengthen future partnerships.
“Meaningful engagement isn’t one-size-fits-all. People bring different perspectives, identities and lived experiences to a research team, and understanding those experiences helps create more inclusive and effective partnerships,” Lisa explained. “The goal wasn’t simply to collect engagement numbers—it was to continually improve our own practices and better support research teams that want to make patient-oriented research meaningful for everyone.”
MSSU’s Nova Scotia team is currently piloting the survey. Although it was developed for the MSSU, any organization can use it to reflect on and strengthen meaningful engagement in patient-oriented research.
Explore MSSU’s patient engagement evaluation survey and supporting resources to help your research team reflect, learn and strengthen meaningful partnerships.
Email patientengagement@mssu.ca to receive a copy of the survey.
Later this year, MSSU teams will come together to share what they learned through the pilot and identify opportunities to further strengthen patient engagement at the MSSU.